Aids that are frequently used for ADNP syndrome:

Aids and support in everyday life

Extreme caution is required with FOP: Surgery, biopsies or intramuscular injections must be avoided at all costs, as each procedure can trigger new bone formation. Aids are therefore primarily used for protection and compensation:

• Protection from falls: as each fall can trigger a new episode, protective helmets, soft padding on furniture and non-slip floor coverings are essential.
• Mobility aids: When joints stiffen, specialized wheelchairs become necessary. These often have to be individually adapted (e.g. with special tilting functions), as the child often has to be transported in a fixed position (e.g. standing or semi-recumbent).
• Everyday aids for restricted movement: As the arms are often affected early on, extended gripping aids (gripping pliers), angled cutlery, long-handled combs or specialized devices for putting on socks can help.
• Adaptation of the learning environment: Ergonomic desks and computer mounts that are adapted to the respective line of vision and arm position enable participation in school and studies.
• Positioning: Pressure-relieving mattresses and special positioning cushions are important to protect areas of skin over the newly formed bone protrusions.